Alsnwwi support Group a gathering of Individuals Touched by als share Joy, Sorrow, Laughter, Tears, and Hope. Receiving a diagnosis of als is challenging and can be very overwhelming

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ALSNWWI Support Group

A Gathering of Individuals Touched by ALS

Share Joy, Sorrow, Laughter, Tears, and Hope.
Receiving a diagnosis of ALS is challenging and can be very overwhelming.

The ALS support group provides a safe place where patients, families, & friends

Gather to share information, support, and resources with others who understand.
Second Thursday of each month, 1:00pm – 3:00pm

At Chippewa Valley Bible Church, 531 E. South Ave. Chippewa Falls, WI 54729

Special Guest Speaker: Attorney David Raihle, Jr. will be present to discuss wills and estate planning.
~July 2014 ~
10 People attended. Topics of conversation: ALS clinic visits; New patient equipment needs and home accessibility; Long term care insurance; Nursing home and supportive home policy options; VA grant for home accessibility improvements and guidelines; Non-invasive ventilator (Puffer), Lifeline.

Books noted: Author Mitch Albom’s “Tuesdays with Morrie”, “The 5 People You Meet in Heaven”, “For One More Day” and “Have a Little Faith”. Author Randy Pausch’s “Tuesday with Morrie is the Last Lecture”.

Website noted:

Lifeline topic follow-up by Jen B: I did find out that you don’t need a landline.  If you can get a cell phone signal then Lifeline will work on the wireless option.  The wireless option is $43.00 per month. St. Joseph’s Hospital takes the referrals and does the Lifeline set-up.  Call 715-726-3485 for further information. Just to clarify that in order for the Lifeline to work on a cell phone you still have to be home near the unit within 500-1,000 feet for the equipment to work. That’s the same distance if you had a landline too.  It’s not like you can just be out with your cell phone in public and fall, push the button and the emergency service works. It’s for safety in your home.

Finding the Rewards in Caregiving By Sheryl Leary

Caregiving usually evolves out of necessity due to progressive disease, declining abilities, or sudden medical changes. Despite this fact, caregivers are usually providing care because they want to. They often enter into this relationship with nary a concern for themselves and with thoughts only of the genuine support they want to offer their loved one. Caregivers can derive a lot of satisfaction from knowing that they are helping someone through a difficult point in their life. However, there are times when finding that satisfaction, figuring out your “reward” as a caregiver, can get hard and the waters you traverse become murky. There are a few things caregivers can do to get back to basics and find their reward.

The first thing caregivers can do is find their “Why.” This involves some introspection. Look back to when you first started providing care and ask yourself “why did I become a caregiver.”  In caregiving, the “why” is something that only the caregiver can define. Your “why” could be because of love, relationship, history together, desire to help or any host of reasons. Once you look back and find your “why”, you need to be creative to come up with a reminder for yourself of your “why.” A daily reminder of why you are caregiving will help anchor you and help you realize your own reward. For some, a daily reminder of their “why” may be to start each morning with a hug. For others, it may be a picture of their loved one. Others may need to use a positive affirmation poster with their “why” written across it, such as “I love my mother.” Having daily reminders of your “why” will do wonders for keeping your caregiving relationship healthy.

The next step in finding the caregiving reward is to find hope. Hope is not easy for caregivers. Caregivers are often dealing with progressive illness, seeing loved ones in pain, or coping with incredible changes in their lives. Hope is not a natural reaction to these circumstances. However, hope is an amazing reward when it is found. Caregivers can start finding hope on a small scale every day. Caregivers can start their day thinking about what they hope for on that day. Caregivers need to be reasonable and keep this “hope” attainable. Hoping to completely reverse the damage from a stroke will probably not be reasonable. However, hoping that you can make your loved one smile that day may be reasonable and attainable.

After deciding what you are hoping for that day, come up with your action plan.  This entails what you are going to do to turn your hope a reality. If you are hoping to make your loved one laugh that day, your action plan may be to find a joke or a funny story to tell. If your hope for the day is that your loved one will be able to toilet himself, what will you do to make that happen? When we connect hope with action, hope becomes the reality. Hope then becomes the reward.

Having several coping mechanisms that get caregivers through their day is essential.  Learning to cope with caregiving allows caregivers to remember their “why” and translate hope into action. One mechanism that can be helpful is to come up with a mantra for yourself. A mantra is a simple statement that will help you gather your thoughts, your patience, keep you on an even keel. Caregivers should think of a statement or saying that they can repeat to themselves in their moment of difficulty, or when they are having trouble facing the day. For example, one caregiver who was caring for her husband determined her mantra to be “what would my father do?” Her father was a paragon of patience in her mind. During a difficult moment, such as cleaning up the food thrown on the floor, she could repeat this mantra to herself.  This gives her a chance to consider how to react to an event, a mental reminder of how she wants to respond. Caregivers need to practice using their mantra so it becomes a regular part of their coping.

Caregivers can also come up with a list of activities that they can do to relieve stress, or take care of themselves. Posting this list on the refrigerator or in a highly visible area may be the reminder the caregiver needs to care for herself. This list should have a minimum of five activities on it.  Some of the activities on this list can be big ticket activities such as going for a hike in the woods or a weekend away. However, these activities often require a significant amount of planning and are therefore not always available in the moment a caregiver needs it. Other activities on the list need to be things a caregiver can do in the moment, such as say a prayer, make a cup of tea, listen to music. Having small, easy to manage activities and activities on a grander scale will remind the caregiver of his or her options when feeling stress.

When a caregiver cannot do the things mentioned in this article, such as remember their why, find something small to hope for and put an action plan in place, or develop coping mechanisms for the day to day, it is definitely time to bring in outside help. This help may come in the form of care provided through a respite program, emotional support for the caregiver such as a support group, help through clergy, friends and neighbors and more. There is help for caregivers, but it is often up to the caregiver to recognize when the need is there. Making use of these programs and informal sources of support can sometimes be the key for the caregiver to start unlocking their reward.

Finding the caregiving reward is not always easy. These are some suggestions for caregivers to explore their caregiving so they can feel that reward within themselves. Feeling that reward while you are in the midst of caregiving is a gift. It is a gift that may help renew that caregiving spirit, help a caregiver to better understand the role she has and appreciate that role. It is the one gift caregivers can give themselves, never return, never regift – it is their reward.

~ Upcoming Events ~

Celebrating 70 years of life with Jack, August 3, 2014, 1 - 4pm, at Potting’s Bar 2391 65th Osceola, WI 54020 715.294.9922


For questions, concerns, or input, please contact:

Julie Chamberlain 715.271.7257 or alsnwwi@gmailcom

Take good care!

Deb Erickson, LPN

ALSNWWI Outreach Support Assistant

Companioning families with ALS 

Misc. articles provided by ALS Association Connections Newsletter

CNN anchor, Suzanne Malveaux, shared her personal connection to ALS in a three-part series which the news network recently aired. Please click here (see link below) to watch part one of this series and read more about Suzanne's story.

Research Update 

New Study Shows Complex Role of Immune System in ALS

In a study supported by The ALS Association, researchers have identified the molecular signature of immune cells involved in the ALS disease process and used it to better understand the disease-related role of these cells, which surround dying motor neurons.

In the study, which was published in the journal Cell Reports, researchers studied microglia, a type of immune cell found in the central nervous system (CNS). They identified 29 genes that distinguish microglia from other cells in the CNS. Using these as cell-specific markers, they were able to study the proliferation and movements of microglia during the ALS disease process in ALS mice in unprecedented detail.
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